Thursday, October 23, 2014

One evening just before
sunset in the third week of October 2014, I walked down the hill from my new
home to the soccer fields. The Boise foothills glowed rose and gold in autumn sun’s last light, and the manicured emerald fields rang with cheers and groans. My
oldest son once played on these fields, in another life, before my divorce. I have since learned that memories can change.

The long lean years of dingy
apartments, of rice served at every meal, of every phrase qualified with “if
the good Lord’s willing and the creek don’t rise,” those years (God willing!)
are over. To walk out of my home—our home—to see those soccer fields, those
glowing foothills, to look back at the picture window, the piano, the wall of
books (his and mine), was a dispensation, a manifestation of grace.

Twenty years ago, in the
third week of October, my father died. He was 50.

I’m still sad about his
death. With the removal of the bereavement exclusion in the DSM-5, the fact
that I still tear up twenty years after losing my father to cancer might
indicate I’m depressed. I’m not—I’m just sad. Sad to think of the grandchildren
who never met him, the hikes we could have shared, the conversations about
faith and life and books and science—his avocation—that would have kept us up
late at night.

That’s one of the
challenges facing modern psychiatry. What type of grief is normal? To me, it seems that psychiatry,
in attempting to answer this question, has barely moved beyond augury or
astrology. As I walked around the soccer field that evening, a bright copper
coin stood out in sharp relief against the sidewalk. I stopped to retrieve it,
certain (as I always am when I find pennies) that it was a sign. Our silly
brains see patterns in the flight of birds, in sheep entrails, in spare change
on sidewalks.

The year my father was
diagnosed with cancer, I learned a German word that has stuck with me when all
the other German words I learned in college have fled. Unheimlich. This cognate’s meaning can
be easily guessed—heimlich for “like
home” or “comfortable,” unheimlich
for uncanny. It’s the discomfiting sense of being a stranger in a land that
should feel familiar.

That’s how I always feel
in the third week of October. We can be orphaned at any age: I was orphaned at
22, on the cusp of my adult life, not quite ready to put away childish things or
to acknowledge the reality of death. As I thought of my father, the bright
penny’s startling appearance banished the ghosts and brought back a sense of
comfort, of belonging, of home.

Gazing at the soccer
fields, clutching my copper token of the universe’s momentary good will, I was
transported suddenly into a present-tense past. I see myself at nine, my
daughter’s age, my hair in two braids, standing on the lawn outside our home in
Pennsylvania. It’s my birthday, and I’m wearing a leather
softball glove, still stiff with newness. My father stands across the way, a
white ball in his hands. “Was it okay to get you this?” my father asks. “I wasn’t
sure if you would like it. I mean, you’re a girl. I mean, a wonderful girl! You
can be anything you want to be!”

My father loves sports—football,
baseball, basketball. I’m his oldest child, and already, I’m more of a book
girl than a baseball girl, which doesn’t seem to disappoint him in the least.
His own father died when he was just seven years old, so he is always trying to
make sure that everything is “okay,” that his performance as a father is
meeting our needs and expectations, that we know we can give him honest
feedback.

Standing in the yard with him playing catch, I know, even as a child, that my father’s gift—what he himself wanted as a nine year old—is the best possible gift he can give me,
even though I’m not particularly athletic. As the ball connects with my mitt, a
satisfying thump, I feel the love my father has for me radiate up my arm and all through
me.

And that present-tense moment, a father tossing a white softball to his nine-year old daughter years later on the soccer fields in Boise, Idaho, is still happening, and was always happening, and
will happen forever.

Monday, October 6, 2014

My son has bipolar disorder. Note: he is not bipolar. He has
a serious mental illness, which he prefers to define as a "mental difference." But he wants the same things any kid his age wants:
friends, a chance to score a goal on the soccer field, good grades, top
rankings in Halo. With the right treatments and supports, he’s been given a
chance to reach those goals.

“If people meet me first and get to know me, then they find
out later about the bipolar, it’s no big deal,” he told me when I asked him how
stigma affected him personally. “But when they hear bipolar first, they think,
‘Oh no! He’s a bad kid!’ And I have to work that much harder, if I get a chance
at all.”

In a series of “mom chats” with my friend Janine Francolini
of the Flawless Foundation, I asked mental health advocate Ross Szabo, who manages his bipolar
disorder successfully, what he would tell my son about living with mental
illness. You can watch his response here. Ross stressed the importance of self-compassion. I think he’s right:
above all else, people who struggle with mental illness (or as my son likes to
call it, mental “differences,”), have to develop a lot of compassion for
themselves, because they often don’t get compassion from others. And as his
mother, I can attest to the fact that parents don’t get much compassion either:
when your child is in a psychiatric hospital, no one brings you a casserole.

One depressing fact: even though anti-stigma campaigns have
made people more aware that mental illness is a brain disease, those campaigns
have thus-far failed to budge the stigma meter long term. I think that both stigma and
the resultant discrimination against people who have mental illness are the
direct consequences of our society’s inhumane decision to replace mental
institutions with another, worse kind of institution: prison. Treating people
who have mental illness by sending them to prison, or even to “mental health
court,” reinforces the idea that mental illness is a choice or a character
flaw. We would never treat people who had a cancer diagnosis by sending them to
jail.

A few months ago, the ALS ice bucket challenge was all over my
Facebook feed. I was challenged, and I refused to participate. Not because I’m
afraid of a little cold water (I will neither confirm nor deny that I have
occasionally enjoyed a post-hike au naturel dip in some of Idaho’s lovely and
bracing alpine lakes). Not because I don’t think that ALS is a serious disease that deserves our attention,
or that I shouldn’t personally contribute to the cause.

My book The Price of Silence about parenting a
child with mental illness is available at
independent bookstores like Iconoclast Books.

I didn’t contribute because you never see things like ice
bucket challenges for mental illness, to fund treatment before tragedy. But this week, my kids and I decided to
participate in the Children’s Mental Health Network Karaoke Challenge, issued
by Linette Murphy, a fellow mom and advocate. I
am fortunate to call Scott Bryant-Comstock, CHM Network director, a friend, and I have
been honored to participate in a series of dialogues about HR 3717 and how we
can fix our broken mental healthcare system.

I’m also planning to use every social media channel I can
this week to join my friends in fighting stigma. “When it comes to mental health, silence is
not golden.” This is the theme of a story-sharing, stigma-busting campaign led
by the International Bipolar Foundation and other groups to fight the stigma
that affects people who have mental illness. Starting Monday, October 6, use
the hashtags #BustTheStigma and #SayItForward to share your stories of living
with mental illness and working toward mental health.

Because the Price of Silence is still far too high for children, families, and communities.

About Me

Liza Long, aka the Anarchist Soccer Mom, is a writer, educator, mental health advocate, and mother of four children. She loves her Steinway, her husband, her kids,and her day job, not necessarily in that order. Her book "The Price of Silence: A Mom's Perspective on Mental Illness" from Hudson Street Press is available in bookstores and online. The views expressed on this blog are entirely her own and in no way reflect the views of her employer (or anyone else, for that matter).